Not Dx'd with Lyme but have 35 symptoms of Lyme Looking for a Lyme literate doctor

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ShelETN
Regular Member


Date Joined Sep 2010
Total Posts : 49
   Posted 9/9/2010 5:21 AM (GMT -6)   
or at least "lyme-friendly" doctor. I live in E. TN....any suggestions....

I have posted on several forums to try to get answers...please help if you can.

Years of pain with a"half hearted" dx of Fibro, I now suspect it could be Lyme. I live in E. TN and the docs around here seem dismissive of this as a diagnosis. Here are my symptoms which have been consistent for at least a month but intermittent for years (come and go, I feel good for a time then I have new or strange pains/symptoms). I have dealt with it thinking it was all contributed to the FMS dx but I am second guessing that.....

Blurry vision
Brain fog
Burning sensation under skin
Itchy skin not due to bites which sometimes is worse at night or laying in bed
Rib soreness
Sore skin as with a sunburn various places and intermittent
Sore skin in areas such as lymph node tenderness in neck, throat, collar bones, arm pits, breasts, chest
Chilling sensations in legs
Left arm from elbow to wrist flashing sensation of pins and needles and feeling like the circulation is being cut off for a second then allowed to flow again (uncomfortable but not really painful)
Difficulty reading (I have to read things several times before it “clicks”)
Have trouble hearing and have to ask people “what?” sometimes I will just try to process it in my head before I asked them to repeat their selves…I hear it but it doesn’t always compute???
Sharp ear pain which comes and goes ringing in ears which also is here and there
Floaters and flashes of light in eyes mostly left side (sometimes this is worse when I move my head quickly) and have experienced light flash when there is a loud noise
Occasionally when walking one foot will “catch” of the floor and I will stumble but not fall (if this happens once then that day I will do it multiple times)
I tend to topple a little to the left side while standing or as I begin to walk until I get going
Fatigue and exhaustion not relieved by sleep
Heavy feeling arms and legs like they are made of concrete
Shoulder pain continually on left side and to the bottom of ribs to my spine
Feeling like my spine is too short for my body and pulling sensations in spine when I turn my head or bend
Same feeling in my eyes-like the optic nerve is too short and have eye pain when I turn my eyes
Rice crispies popping and cracking, gurgling feeling in neck when I turn head
Fever sometimes daily 99*
Joint pain almost continually in fingers and toes
Inside of knees joints continually hurt
Finger joints on left hand index finger swollen and painful now moving to the right hand, very end of my fingers hurt and first joint pain is constant
Left knee upon waking with feel hot from the inside out and there is some fluid on knee, odd feeling in that leg from knee down
Intermittent ankle pain
Bottoms of feet feel like fluid retention and painful when walking especially upon waking or from sitting
Tingly feeling in lips, fingers and toes
Numbness in left shoulder/back area
Light headed especially upon standing
Bladder spasms and sometimes painful urination which causes me to wince
A couple of times felt like the room flip flopped upside down
Depression (on and off for years)
Anxious feeling
Insomnia
Short term memory problems (sometimes I can’t recall something I did yesterday)
Sinus issues, stuffiness, constant clearing throat, excess mucus
Stabbing pains or shooting pains and sensations (may be down arm or legs)
Restless Leg especially if I take any medication with a sedative affect such as benedryl
Restless Leg sensations in chest and arms
Waking up to clinched arms and teeth
Muscles feel like they lock when I stretch
Tearful, weepy feeling
Twitching eyes/lids
Unable to find words I am looking for
Brain fog
Cold hands and feet sometimes even when the weather is warm
Unusual pain in various places which may last a week or 2 then be completely gone
Gurgling in stomach, bloating feeling, bowel urgency but unproductive
Ovarian pain (cysts)
Break through bleeding between periods (which seem to be regular now but I have had frequent periods coming 2 weeks apart)
Frequently find myself sitting or laying in uncomfortable positions and not realizing it until it has become very painful
Low back pain
Facial swelling and fluid retention in lips and eyelids (not sure if it is noticeable to others) also in hands and feet
Feeling like my speech is slurring and hearing this but not noticeable to others
Skin sensitivity to touch
Forget what I am about to say and inability to recall words or events
Occasional fever blisters and gum sores
Possible light sensitivity in eyes
Ear sensitivity to loud or sudden noise
Burning pain in various spots sometimes relieved by moving
Heart fluttering especially when laying on my left side
Left side of body feeling like it is “weaker”
Pain that starts on one side of body, lasting a week or so then slowly subsiding migrating to opposite side of body (mirror image pain)
Easy bruising or mystery bruising
Joint pain that sometimes has itching or burning sensation

Any suggestions, advice, thoughts anything would be appreciated....going to doc tomorrow and I am taking a "less passive" approach to the appointment this time.
S~


I have to add to my above posting that 1 year ago I had been bitten by something in the calf of my leg, which made me sick with flu like symptoms. I did have a huge red circular rash which itched at first then burned and 8 hours later swelled, was hot and painful. It extended over the entire calf area and went to the doctor next day. Said it looked like a black widow bite. A round of antibiotics cured it I thought and within a week my symptoms were gone except for the bruising that the swelling caused. The pain was so intense at the bite area that I literally had trouble walking.

A month ago after being bitten by 30 or 40 mosquitoes when I was in CT visiting family I came home and one week later spent the night in the ER after I become acutely ill with 103* fever, muscle pain and cramps, numbness in lips, face and extremities, severe and sudden headache, chills, sweats, hands and arms along with toes and lips drawing like I was a stroke victim.

Now like I said I have had some of those symptoms on and off for years being dx'd with Fibromyalgia. At times, I never knew whether I was getting the flu or it was a FM flare. I have to add that I have worked the past 14 years as a dog grooming and come into contact on a daily basis with dogs that are loaded with fleas and ticks and I have found them on me many times over the years and mosquitoes eat me alive during the summer months.

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 9/9/2010 7:26 AM (GMT -6)   
Hi Shel,

Well, welcome to the Forum. Sorry you have to be here. That is quite a list of symptoms. I laughed when I saw that you had listed "brain fog" twice -- a real indication that you have it!

This is a great forum, supportive and informative. Someone will be along in a while to give you a lead on a Lyme literate doctor in your vicinity.

Well done for taking your health in hand. Everyone here will say you have to be your own advocate. Yes, take a less passive approach to your doctor. Bring your research. There is a sticky at the top of this site " New to Lyme" which will furnish you with some information to take with you.

Tell us how it goes.

Here's to getting your health back.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/9/2010 10:27 AM (GMT -6)   
Hi Shel!!!
Welcome to our forum!! I am sorry that you have need of this forum, but I am sure glad you found us!!! As Achievinggrace said, we try to be helpful, supportive and of course, full of information!!!

When I first came to this forum about the only thing I didn't have was testicular pain (I'm female!!)!!!! With what you have listed, I would be quite surprised if you didn't have Lyme and a few co-infections. If you can get the doc that you will see tomorrow to give you a 'script for some antibiotics to get you started, that would be great!! The longer you wait, the more buried into the tissues these little buggers can get.

It would be very helpful for you to read through the thread that Achieveinggrace mentioned "New to Lyme?...Start here". There really is a lot of info there. I've been on this forum for several years now & I still go back to that thread to refresh my memory about something!!!

I got a giggle when AG said that you had listed brain fog twice -- I didn't even notice that!!!!!

Let us know how your docs appt goes tomorrow! You do now need to be slightly aggressive when it comes to your health - there are a whole lot of docs out there that will either refuse treatment or under-treat tick-borne infections. Most Lymies at least try the abx route, but there are several different 'styles' of medicine that are represented here. I am using Acupuncture with Western and Chinese herbology, and have had very encouraging results.

Hope this helps some.
May you find peace along your journey to health.
trav
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/9/2010 12:24 PM (GMT -6)   
Shel,

I scanned through your message and list and just wanted to shoot you a quick note to say - my symptoms initially started with excruciating, disabling pain in my left side (ribs and skin were so sore and tender it even hurt to blow air across my skin). You have SO many identical symptoms to what I've had.

I know a lot of people are grateful for their Fibromyalsia diagnosis; however, I would not be. I was tested for it and it was ruled out (thank goodness). I wouldn't have "settled" for it, because I knew there was something else going on... It took me over 30 doctors to get appropriate help...so don't give up, as hard as it might be. I actually got to the point (on about the 5th doctor) that I just didn't care anymore. It was too much to get out of bed and into the car, but my mother kept me trucking on and thank goodness... Don't give up - you have to be your own advocate!

I wish you all the best.

Rachel

ShelETN
Regular Member


Date Joined Sep 2010
Total Posts : 49
   Posted 9/9/2010 4:40 PM (GMT -6)   
So I went to the doc today. Now this is a NP filling in for my regular doc but I have seen this NP 3 times this month but what was the first thing she asked me "Have I seen you before?" GREAT!, this is going to go well...

"yes, last week...." I wanted to say "your kidding me? so nowadays doctors dont do any homework or follow up on their patients or even maybe take a look at the files before they come into the ROOM????!!!!!"

So there was no prescription, no exam, no nothing....I told her here are my symptoms and it's getting worse and I believe it's lyme and I need a referral or somewhere I can turn for help. I said here (handing her 50+ pages of info on Lyme) is information why I believe I have it. She said hold let me ask another doctor.....she came back in and said she would put me in for a referral.....she has one week or else i am finding a new PCP.

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 9/9/2010 6:36 PM (GMT -6)   
Oh dear,

That was a let down. Looks like you found the limit of her experience. Hope she comes through with the referral.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/9/2010 8:23 PM (GMT -6)   
I agree with achievinggrace on this one - hopefully she will come through with a referral!!!
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav
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